Patient Voices on Psychological Wellbeing, May 2013

"I could talk about psychological wellbeing all day on this lovely couch"

The previous post introduced the Patients Voices meeting we held in London on 11th May. This post shares the notes from the breakout discussion group which looked at Psychological Wellbeing with a thyroid condition. 

With many thanks to the participant who has kindly typed these up and included the links to the two articles which help illustrate some of the points the group explored.

Psychological Wellbeing, Discussion Group Notes:

We talked about coping strategies people have for helping manage their psychological wellbeing with thyroid conditions.  

One person has been on anti-depressants for just under 6 months and it has transformed her life.  She did have adverse effects the first couple of weeks but was warned about this by her doctor and stuck with the prescription.  One interesting note is the antidepressant has a warning note it should be not be given to thyroid patients but the doctor is still prescribing the medication. 

A couple of people talked about concerns if long term lack of treatment for thyroid conditions might affect brain function generally.  Some in the group had suffered untreated for years, they think in hindsight. 

Also when the doctor does realise there is an issue with the patient's thyroid, they don't say enough about coping with how people may FEEL with this condition. 

There was a bit of a discussion about the differences people are feeling between overactive and underactive thyroid conditions, but we didn't talk a lot about that, and I don't have any detailed notes about it.

One person talked about her issues with general physical weakness.  She talks a lot to herself to keep her spirits up.  Also she's learned to pace herself to bank her energy.  

Working and raising children is an added stress.  If people have the opportunity to not work, then they can rest more during the day.  Also if you work, you'll try to hide your symptoms from co-workers which is an added stress.

For many, there was a feeling of years wasted.  Too often people compared themselves to others and thought they hadn't accomplished as much.  One person keeps a journal listing anything she does and completes.  She refers to that to help her realise she is getting things done.

I mentioned research I've seen in the past where the human brain is wired to remember negative experiences much more prominantly than positive experiences. The theory is this goes back to caveman days where that memory trait helped people to survive.  One way to combat this bias is to keep a scrap book of positive things you did or experienced. That way you can read that to balance out your memory better.  I can't find the original article anymore, but here's 2 articles on the internet I found just now that indicate similar technique:

Article One - Journaling and sharing can enhance happiness 

Article Two - The memory bias

 Someone mentioned that coping techniques generally for any chronic illness can be useful, so don't just look for articles about thyroid conditions.

Relaxation and exercise are really helpful to people in the discussion group.  Also breathing and meditation were found to be helpful.  Trying to 'be in the moment' was good too.   I mentioned some research I've seen that walking and getting outside in nature is really good for health and mental wellbeing.  There's research indicating the effect of walking can be equivalent to taking antidepressants.  Also a friend of mine and I realised as part of losing weight that the biggest battle with exercise is getting out the door initially.  Once you pass that hurdle you do exercise like walking and you enjoy it - even 5 or 10 minutes is good.  So we thought you have to do whatever you can to facilitate getting out the door - like keep your walking shoes and exercise clothes handy/nearby the door.

Coming back to doctors, people said that doctors generally don't explain enough what could happen with regard to thyroid conditions.  They don't seem to pool knowledge.  Also advice is not holistic - you have to advocate for yourself.

It's also variable how people's conditions are picked up correctly by doctors.  With some patients the doctor figures things out quickly and with others they wait years for the condition to be recognised correctly.  It also makes a big difference if the doctor is supportive. 

There seem to be lots of different opinions amongst different doctors and also lack of follow through by doctors on other related health issues.

When doctors more clearly say what's happening or what to expect with the condition, then the patient feels more psychologically stable because they understand more what is happening to them. 

Sadly  some doctors  don't seem to be concerned about quality of life for patients with thyroid condition.  Also thyroid conditions are not viewed as a major illness. 

Lastly, it was noted that the group on Saturday is really rare and very treasured by attendees.

Hints and tips for poorly hypothyroid patients

It's now more than 3 years since I was diagnosed as hypothyroid. What have I learned in that time? Quite a bit. How have things changed? Beyond measure. How is my health these days? A LOT BETTER - HURRAH!!! For those who are currently feeling rotten, there is light at the end of the tunnel. I firmly believe I can promise you that. 

"There is light at the end of the tunnel." Pic from activerain.com 

I have a lot of conversations these days with other thyroid patients who are at different stages in their recovery from a hypothyroid diagnosis. I thought it would be useful to post a summary of the advice I now pass on, based on my own experiences and what I've learned from reading, from other patients, from my various doctors appointments and from the wonderful talks with leading endocrinologists I've been lucky enough to attend through the British Thyroid Foundation London Group meetings. 

I have learned that hypothyroidism in the UK is mostly caused by an autoimmune disorder called Hashimotos Disease. Whether or not the doctor talks about Hashimotos makes no difference. Some doctors name it, some don't. Most people respond well to treatment with thyroxine via their GPs, but around 20% are harder to treat. I am one of the 20%. 

I have learned that thyroid hormones govern a lot of functions in the body: food metabolism, weight, brain function, feeling the cold, emotions, hair condition, skin and nails, they also impact on heart and bone health. When our thyroid hormones are unbalanced we can feel and look pretty dramatically terrible. It's not much fun. 

I have learned that anyone exhibiting mental health issues should have their thyroid tested.  I experienced extraordinary tearfulness and low emotions for a while when my thyroid hormones were clearly badly out of kilter. It was pretty strange but fortunately very temporary. Generally I'm a happy soul, explaining that to my doctor as I found tears welling up when I was talking to her helped her to understand that my tearfulness was a thyroid symptom and not the depression it may have looked like to begin with.  

I have learnt that sadly some doctors are not very on the ball when it comes to thyroid conditions. However there are plenty of good doctors out there and there is no need to tolerate one who is either unsympathetic or  ignorant about our conditions.  BTF is working with the BTA, the endocrinologists professional body in the UK, to help raise the standards of GP care for hypothyroid patients.  I'm not sure how well that project is going as I haven't had an update for a while but I am determined to do what I can to support it to progress as it's very clear from various websites and conversations I have with patients at meetings on the phone that action needs to be taken. In the meantime, if your doctor isn't giving you the care you need - change them. Ask around to find a doctor in your area who has a good reputation. 

I have learned that often patients who don't feel right when their blood tests are in the normal range may feel better when their TSH is at the lower end of the range and their T4 is at the upper - end and GPs have the flexibility to adjust thyroxine doses, within the range, until their patient feels better. 

I have learned that the official treatment guidelines for hypothyroidism state that if a patient still feels unwell when their blood tests are normal and the GP has done as much as they feel confident to do around tweaking the dose of thyroxine, they should be referred to an endocrinologist who can do more tests and may suggest alternative treatment. 

I have learned to always insist on being given my blood test results and to take my results and a brief symptoms summary to every doctors appointment. 

I have learned that a suppressed TSH can cause serious heart and bone problems and that's why doctors don't want to risk prescribing too much thyroid hormone and are mostly not keen on prescribing T3 meds. (my TSH was less than 0.05 for quite a while and I now know it wasn't wise to let it stay that way, hence my recent dosage reductions).

I have learned that taking T3 (liothyronine) medication alongside thyroxine did not solve my thyroid problems although it seemed to be helpful for a while.  I have found that ultimately other factors seem to have been more significant in my recovery.

I have learned that symptoms can be down to causes other than thyroid, if we have one autoimmune condition it basically means we have a weak immune system and will be prone to others. Aren't we lucky. Other possible causes should be investigated as a priority when a patient isn't responding to hypothyroid treatment as expected.  It was discovered that I had a vitamin D deficiency, when this was addressed I quickly felt  lot better and now I take vitamin D every day, as well as my thyroxine. 

Absorption is a big issue with thyroxine. We take tiny amounts, micrograms of the stuff and if it's not helping us feel better there's a good chance that we're not absorbing it properly. Lots of things can impact absorption: first and foremost thyroxine should be taken well away from food and caffeine, even just a cup of tea drunk alongside your medicine, can really have an effect. The BTF guidance for hypothyroid patients says to leave at least 30 minutes before eating or drinking anything other than water after taking your meds. 

It can be worth switching when we take our medicine, to evening instead of morning so that it can be absorbed over night in an empty tummy. This can have a really profound effect on how well we feel.  There is some recent research in favour of this and I have lots of anecdotal evidence from people I've spoken to who've done it and been surprised and delighted with the results. 

I have learned that trialling a gluten free and generally low carb diet seems to be helpful for quite a few thyroid patients, even when we haven't tested positively for celiac disease. It doesn't help everyone and it can be a bit of a controversial area but my view now, on going gluten free, is that it is worth a try - and it has made a big difference for me. I have spoken to several endocrinologists who agree that patients who are struggling would do well to see how they get on without gluten. I cut out wheat first, for a month, that definitely helped me so I went the whole hog and 2 months later I have lost a stone and feel much better.  It's still early days but I feel very positive that this has been something I've been able to do for myself and seems effective. 

Finally I've written a lot in other posts about mindfulness and gentle exercise and all that good stuff. On the Expert Patient Programme I learned that we are always managing our  health, whether we do it positively or negatively.  I know that when I allow myself to get upset about stuff I am exhausted afterwards, so I cultivate serenity. I treat myself and others nicely. I communicate clearly, I take time out when I need it and I accept that I can't always do everything that I want to do. I'm only human, everyone has their limitations, I count my blessings, literally, regularly - and when I do that it always makes me smile. 

I hope this summary of things I’ve learned on my journey with hypothyroidism has been helpful.  Let me know what you think and if you have anything to add.

With Love and Light and Hope

Experiences with T3 treatment - part two

As I write this I have a few misgivings. I don't really know what's going on you see. I can only share my own personal experiences and I don't want to mislead anyone and the fact is, at the risk of repeating myself, I really don't know what's really happening with me at the  moment.

However, I promised an update on the T3 situation so here it is. How things appear to stand, right now.

If you haven't read Part One then you probably need to, or this post won't make much sense.

As reported in Part One, on reducing my T3 meds initially I didn't really feel a difference. I was surprised and delighted. As the days went by I noted that really there seemed to be no change. I didn't feel 100% normal but I didn't feel worse than before the change. So far so good.

But over time I began to wonder if my brain had become a little more foggy..... I'm still wondering that.... but I don't know...it's hard to tell.  I am learning that for me thyroid symptoms are subtle and changes take a long time to become apparent.

I have a belief that perhaps T3 medicine helps my brain function more clearly. Partly this is based on my memory of when I started taking T3 alongside thyroxine.  I remember our first British Thyroid Foundation London event back in April 2011 which was a just a day after I started taking 20mcg daily of T3 (for almost a year prior to that I had been on 10mcg which I thought had helped me, but maybe not that much), I was thrilled at the time by how much more energetic and on the ball I felt during that event and yet I noticed that although I was able to stand up straight and talk coherently and manage the event effectively, my brain felt like total mush during Mark Vanderpump's presentation, I literally couldn't absorb information, nothing stuck, facts just bounced off me and it was like I was an untuned TV or something, kind of full of static!

Here I am welcoming everyone to our first event in #April 2011, Judith Taylor and Mark Vanderpump seated on right

But then when we did our next event, when I had been on the increased dose for a while, my brain was working fine, I could understand what was being said easily, as well as doing the stuff I needed to do to make the event go smoothly. I was so happy, I felt close to normal and people there commented that I seemed so much better. 

Sadly I then had my thyroxine reduced (which seemed like a good idea at the time as I believed it was the T3 that was  helping me and with a TSH of less than 0.05 it seemed reasonable to aim to get that up a bit, to avoid long term bone and heart problems) and slowly over the next few months I ended up seriously mushy brained again. Sigh.

Those events are not my only two frames of reference but for me they seem meaningful. Maybe they are, maybe they're not.  The truth is an elusive animal. Evidence can be misleading. There is the whole Vit D scenario to consider, as outlined in previous posts.  Writing this post has made me think it is worth reconsidering the timeline of events and symptom changes to consider whether there are other factors I should be more mindful of.

Anyway, back to 2012 and my new endo recommending we reduce the T3 and see how we go, on the proviso that if I feel worse I get to go back to the original dose. It's now more than 2 months since the initial reduction. I'm now concerned that I seem to be in a bit of a daze. I have been ultra slow responding to comments on this blog, I have been short of work yet not felt able to summon the mental focus to do much about looking for more. I've felt muddled  and slow when doing the work I've had. I had a job interview and was very rambly and waffly in it (which seems like a sign my brain is foggy though could simply be I am out of practice since it was my first interview in 5 years). I feel I have been unbelievably slow and disorganised around my British  Thyroid Foundation admin and communications. Housework and hairwashing have felt like major tasks.

Yet on the positive side, I have lost more than half a stone (this is likely due to dietary changes which I will write about separately) and I am taking regular exercise! Actual exercise!! I'm playing badminton once a week and also going to weekly yoga and tai chi classes. The badminton is quite a full on aerobic work out, but I am  playing with ladies who are all older than me (it's a daytime club so most of my fellow players are retired and we are all women), so it's not as full on as it could be, but it is a proper work out. The yoga and tai chi are both super gentle, also mostly retired ladies in the classes, but the teachers are excellent and I can feel the benefits already. I actually feel quite confident that I am going to be able to increase my physical exercise and fitness levels over the coming weeks and months. Gently does it, pacing myself carefully. Avoiding the classic chronically ill person's pattern of doing too much as soon as I feel better and then knocking myself back.

So, to cut a long story short, am I better or worse??? I don't really know!!

I had more blood tests at the start of June and finally got the results this week (NOT impressed with that time delay thank you, Kent NHS). My new endo has now suggested that I cut out the T3 meds entirely until my next appointment with him in September. Basically the original dosage cut has not really impacted any of my numbers. TSH is still less than 0.05, T4 and T3 are still right at the upper end of the range, in fact they have both increased slightly.  I have decided to follow his advice. Today is day four of thyroxine only. I don't feel worse, I don't feel better, but experience so far tells me that it will be a while before I can really assess the impact. Trusting that he will let me go back on it if I am worse when I see  him next, or if I really feel worse in the meantime, watch this space.....wish me luck!

As always comments are positively encouraged, I'd particularly love to hear how other people have got on with T3 treatment, or just generally compare notes with other thyroid patients, or those suffering from other chronic illnesses

sendiing smiles :)

Get up, get down, keep moving...

For the last few weeks I’ve been spending my Wednesday afternoons with a group of other women with chronic illnesses.  Lucky old me eh? My life is just like one big disco party...

(photo of disco ball c/o my Auntie Margaret's sheltered housing common room,

 music from the depths of my disco memory, click to play.)

I signed up to do an Expert Patient Programme course because it promised to help me learn how to manage my chronic health condition and get the most out of the medical profession.

On the whole I have to say it has been quite useful though not entirely what I expected.

The course leaders are volunteers who also have long term health problems. They are lovely ladies and extremely well prepared for every session with flipcharts and notes so they know exactly what they’re doing and it’s all very clear for everyone.

EPP trains them and in fact during our course they were assessed and have become accredited, which means that the next course they deliver they will get paid which I think is pretty good.  I’m all for patient power and turning your experience of illness into an earning opportunity seems like a positive step. It also removes that sometimes uncomfortable professional:patient relationship that us sick people can have sometimes with our doctors.

At the end of the day, we’re all people, while I recognise that experts will (hopefully!!) have more knowledge than me about my illness and I need their help, there’s also a lot of value in getting advice and support from other people who have gone through similar stuff to me and are not going to see me as somehow less than them.

(Anyone else ever felt that their doctors don’t always seem to take them entirely seriously? I find that so tedious and BAD for my self esteem!)

Great value too for the NHS – mobilising patients to help each other has got to be a sensible long term strategy for sustainable health service – no??? Come on!! On that note I’d just like to share this excellent Ted Talks video from Dave deBronkart also known as @epatientdave.

So what have I learned so far? Different things to what I expected.

We did some stuff on communications skills and I’m super keen on this stuff because communication is one of my passions and I’ve studied it as well as being employed as a professional communicator for most of my adult life. But surprise, surprise, there wasn’t anything new there for me, basic stuff I know already and I felt that it was skipped over too quickly so that if people didn’t know it already (and not everyone would) they wouldn’t necessarily “get it” in the short session we did. Still there’s more of that to come, I may yet have a communications eureka moment!  I have to try not to be so judgemental and the content we did cover was good stuff, just not new for me.

Then we have done quite a lot on exercise and I didn’t think I was going to learn anything new there. Exercise is exercise, right, we all know it’s good for us and we should do it. When we’re ill of course it’s difficult, sometimes impossible. I learned at the Fatigue Clinic that while I’m not well enough to go running or to a yoga class for an hour, I can do 5 mins of exercise every couple of days and over time will be able to build up to doing a few more minutes, then more and more till I find I am as well as I ever was....

While I can only hope that the end bit of that will turn out as promised! And if it happens I have to expect it will take a long time, I have been doing little 5 min runs and finding that I enjoy them and feel better for them – yay me!  That was one of the useful things I took away from my sessions there (more on the Fatigue Clinic another time)

In the EPP group there are people who are not fit enough to do the little runs I am managing – but they are setting different goals, like walking up a flight of stairs a couple of times a day, or doing a few gentle upper body exercises in a chair. So I have been reminded again how lucky I am not to be much more ill than I am. And I am inspired by these women’s determination and commitment to take on their situations and take the daily steps towards being as mobile and as well as they can.

The group dynamic has encouraged me to set specific exercise goals and to achieve them. We also  had a great group discussion about why exercise is so important. It affects our bone density, our blood pressure, our muscle tone, our levels of pain, our heart health, our state of mind, our stamina and breathing, so many things beyond just the wanting to be trim and strong that I was focussed on. I really “got” how important exercise is, more than I had previously fully appreciated. So that’s been quite surprising and an unexpected lesson!

I’d love to hear from anyone else who’s done an EPP course, or anything like it, or anyone who’s read the great course book which is available on Amazon for not very much money and I’m super impressed with.

What do you think of the idea of patients helping themselves and the weird power dynamic that I feel exists between people who happen to be patients and people who have chosen to be doctors? Do you agree with Dave's video?

How do you get on with exercise? Or communicating with your doctors for that matter?

I will blog more about this course another time. Thanks so much for reading, it means the world. Comments as ever are very warmly welcomed.

Hope